Vulvodynia Support
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» Hope to all my suffering ladies
New and confused :( opinions needed please EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New and confused :( opinions needed please EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New and confused :( opinions needed please EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New and confused :( opinions needed please EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New and confused :( opinions needed please EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New and confused :( opinions needed please EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New and confused :( opinions needed please EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New and confused :( opinions needed please EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
New and confused :( opinions needed please EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


New and confused :( opinions needed please

2 posters

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Post  quixotic Fri Jul 11, 2014 5:52 pm

Hello, i'm very confused and upset and looking for some opinions on what could be going on with me, I will try to keep it brief...

Problem started January after two courses of antibiotics - suspected Thrush, no swab taken at time due to how swollen/painful area was, felt and looked very red/inflammed and aggravated inside, alot of discharge, thick white/yellow coloured, multipe doses of Fluconazole.

After the treatments of Fluconazole the extent of the interal swelling/aggravated feeling had subsided but it did feel like there was still swelling around the opening, there was still a lot of discharge and a very uncomfortable feeling externally, very sore at times, started burning when urinating and discharge was ranging from a thick yellow to a watery grey/white colour. In addition to this there has been pelvic pain, burning and sharp pains around ovary area and abdominal pain.

As of July 2014, the external pain/burning/extreme discomfort feels like it starts at the vulva and goes all the way back to the anus, looks red and inflammed and at the start and end of the monthly cycle it feels like it flares up even worse, this has been happening monthly for the last seven months, still burning/stinging when uriniting and even after bladder is empty the stinging/burning feeling lasts a minute or two afterwards. Vulva feels very aggravated and uncomfortable, doesn't feel like a mild irritation, feels very deep within, the worst feeling parts seem to be the clitoris going down to the perineum and at times the perineum feels hard and sore. Aqueous cream that was suggested has had no effect on any relief, have also tried Timodine and Clotrimazole amongst many other creams and none of these have any effect. I also feel like the discomfort is in my lower back and when this all started I had very sore lower back pain with no reason as to where it came from. I do not wear restrictive tight clothing and I wear cotton underwear. I use dermol to wash the area and even though it was suggested that it could be my washing powder that is causing it, I do not believe this is the case as having changed my washing powder to non biological and using a hypoallergenic softer (do not use the softer on underwear) I still have no relief and I do not see how washing powder can cause internal pain, I also do not have any skin irritation elsewhere. This problem is causing me sleepless nights, the feeling down there does not feel like a mild aggravation due to an allergy of sorts, feeling very stressed out and upset that seven months later I have no answers as to why this is happening and do not feel like it is being taken seriously how badly this feels, it is not something I can live with, I feel constantly upset on a daily basis by it, it is so uncomfortable and distressing that leading any sort of normality is very difficult Sad

I was sent to a gynecologist who didn't bother to do anything other than yet another swab test which came back negative for stds and the type of infections they test for, i'm now being referred elsewhere and hoping that someone will take the time to look into what is going on. I have asked the non interested doctor if I have possibly caused myself some sort of infection by shaving and cutting myself accidently down there but that was just ignored.

Basically what i'm wondering is does the above sound like vulvodynia? does vulvodynia cause the same feeling in and around the anus or is it mostly restricted to just the vagina? I honestly feel like i'm on the verge of a breakdown, I feel constantly upset and on the brink of tears Sad

Any opinions would be really appreciated, I feel like i'm completely alone with this to the point that the doctors don't even realise how bad it feels.

quixotic

Posts : 3
Join date : 2014-07-11

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Post  Caropes Fri Jul 11, 2014 6:52 pm

So sorry for your pain! I have many of your same symptoms. My pain started after back to back treatment for a bacterial infection. My pain is on the outside, all around the vulva. The pain is nerve-like and constant. The pain feels deep and does seem like it goes straight back to the perineum and up to the clitoris. I also have very low back pain. After seeing multiple doctors, one doctor diagnosed me with Vulvar Vestibulitis. (This was only after I brought to him the info I had found on the internet!!). He prescribed me Neurontin (Gabapentin). I have worked up to 600mg x 3 day. It has not really helped much at all. My pain level is still around 7. The meds did help a bit with my depression though. I have been and still am where you are. I feel your pain and depression. Who knew something like this even existed? I have an appt with a new gynocologist next week for a second opinion and hopes of getting some different meds. I have read many women benefit from Lyrica and Amitriptyline.

Can you see a different Gyno, urologist, specialist? Where do you live? Our symptoms do sound mostly similar. Feel free to IM me or my personal email is caropes32@hotmail.com Just try to hang in there. I have found some relief with this forum and all the caring women. Just one day at a time is all you can do for now.

Caropes

Posts : 58
Join date : 2014-06-02
Location : Alabama

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Post  quixotic Fri Jul 11, 2014 7:40 pm

Hello, I really appreciate you responding. When you say pain what do you mean exactly? I don't feel it as pain as such, do you mean pain as if you accidently cut yourself or stubbed your toe? I have had a hard time describing what it feels like, the only way I can describe it is like a deep aggravated bothersome chronic feeling, like an irritation but not itchy, it's never been something I want to itch. Last week was my first Gyno appointment, i've never had blood tested (not sure if that's something they do) i've never had an internal exam, the Gyno basically just done another swab and looked externally and said it looked mildly irritated but on the day I went it didn't even feel bad, it wasn't until the weekend that it's got insanely bad feeling which made me think it was due to shaving and accidently cutting myself as it usually only flares up this bad before and after my period. I just feel like i'm going round in circles with doctors who aren't interested and want to use any excuse as the problem Sad today I was given Nystatin cream but i'm sure that's for thrush so I don't know why the GP (not my usual doctor) bothered, the other thing i've been given in the past is  Instillagel which is generally used when inserting catheters in people or before internal invasive procedures so does that not say something about the lack of understanding or interest from the doctors I have seen? I have been referred onto some sexual health clinic now, apparently with gynos but apparently it's a walk in place mostly but they take appointments, somewhere that people mostly go to for STDS so i'm not sure how helpful they are going to be Sad I also live in Scotland, where are you from? also i'm really baffled about how they diagnose such a thing when professionals don't seem to know what it is or how to cure it?

quixotic

Posts : 3
Join date : 2014-07-11

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Post  quixotic Fri Jul 11, 2014 8:03 pm

Does anyone have the feeling they get in the vagina going all the way round to the anus? even above? I even feel it in my lower back, it's really uncomfortable, it almost feels like it's inside and like some sort of irritated pressure.

quixotic

Posts : 3
Join date : 2014-07-11

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Post  Caropes Fri Jul 11, 2014 8:20 pm

Got your email and sent you one back.

Caropes

Posts : 58
Join date : 2014-06-02
Location : Alabama

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